1938 / Class of '02 / Type
1938 / Class of '02 / TypeIgG Lambda / lytic lesions, plasmacytoma / PBSCT, remission /
Born in Wheeling, WV. Dx IgG Lambda, stage 2A in 5/2002, M-spike of 1.2 at diagnosis, but many lytic lesions in skull, and large plasmacytoma in left iliac bone, all other chemistries normal, hematology normal. 4 rounds of VAD had minimal impact on Myeloma, m-spike at 0.9gm with 35% plasma cell load noted at BMB. Oncologist shifted protocols to high-dose Cytoxan/Dex. 4 rounds of this (Cytoxan infusion every 21 days, pulsed Dex 20mg 4 days "on" 4 days "off" did the trick. Plasma cell load fell to <5% and m-spike <100mg/dl. Other prognosticators looked really good: B2M at 1.9, CRP normal, all chemistries normal, hematology normal except for low white cell count caused by the Cytoxan, corrected with 3 shots of Leukine. The only objectionable side effects were weakness in my legs, most likely caused by the Dex, and steroid-induced diabetes which was easily controlled with Glipizide SA 5mg/day. I did buy a glucose meter to keep track of my blood sugar. This problem resolved itself as soon as the Dex was discontinued. The weakness made walking fast almost impossible, and climbing stairs a chore. I finished up the last Cytoxan/Dex infusion the first of February 2003.
My oncology team had recommended that I consider a stem-cell transplant, and after hearing their presentation, and reading all that I could, I made the decision that this was the best procedure for me. I had all of the preliminary testing done at Inova Fairfax Hospital the 2nd week of February 2003: MUGA scan, full body scan, pulmonary tests and even a psychiatric evaluation (OK, I'm nuts-we all knew that). Happily, I fell within the parameters of "acceptable". The decision to do my SCT as an in-patient rather than in the clinic as an "outpatient" was made, as I have no care-giver, and one is really needed for the outpatient SCT. I had the tri-lumen catheter installed in "outpatient" surgery, and started the 4 day Neupogen growth-factor shots shortly thereafter. I did have moderate bone-pain from my marrow expanding to produce all the cells the Neupogen had caused. The apheresis procedure, or harvesting the circulating stem cells involves sitting in a comfortable chair, whilst hooked up to the centrifuge. One line from the installed catheter draws blood out, runs it through the machine separating the cells, and then returns the blood to the patient: a real no-brainer. Normally, 3 or 4, 6-hour sessions are needed to harvest enough cells for 2 SCT's (they do like a surplus). The first evening, the supervising technician called me and reported that I didn't have to come back, as I produced 15 million stem cells in the first sitting - enough for 4 transplants with some left over!
One week later, I checked into Inova Fairfax Hospital for the Great Procedure. As soon as my body hit the bed, they plugged in i.v. Atavan. This Valium-relative has a dual-purpose: it's a good anti-emetic, and a good amnesiac: it makes time "fly." The first bottle (a lethal dose) of Melphalan was started shortly thereafter, and the second bottle the next morning. Actually, my SCT was "textbook"...whatever that was supposed to happen on whatever day actually did happen on that day. I went neutropenic on schedule, was reinfused with my stem cells, felt awful for 3 days (greatly relieved by pretty nurses, though), and the reinfusion "took" and my counts rebounded right on schedule. On day 21 they threw me out, and I went home. Side effects: weakness, and an awful diarrhea, which caused some embarrassing accidents, which didn't bother the staff at all, but did upset me. Oh yeah: my taste buds went "blooey" and that really upset me: food tasted horrible, and I lived on Boost and Ensure for the next several weeks. Otherwise, I felt fine.
One big, big problem: I had reported the continuing diarrhea to my oncologists, and cultures revealed the presence of Clostridia difficele, and nasty "opportunist" that grows when the normal gut flora gets disturbed by the chemo. Standard treatment (metronidazole - Flagyl) would knock it down for a few weeks, then it would flare up again. I had three cycles of Flagyl treatment, with the dosage being increased each time. Then suddenly, about 2 months after my discharge, I got very ill, and did make it to my oncologist's office, only to completely collapse in the hallway. Scared them and me. I woke up on my way to the hospital when they plunked me in intensive-care with a fever of 104plus and severe dehydration, tachycardia (140 per minute) and generally a mess. It took 8 more days in the hospital to knock out that C.diff. I was one pretty sick puppy. Clostridia difficele is reported to be increasingly resistant to metronidazole of late.
Since then, however, I have been in Complete Remission (hooray)...I am coming up on my 3-year anniversary in March. Back in November of 2004, a year and a half after my SCT, my oncologist recommended that I start on Thalidomide to "extend" the remission as long as possible. I take 50mg daily, and for the last 9 months, have "stretched out" the time period to one-every-36-hours to lessen the p.n. that has developed in my feet. So far, so good: the CR continues...the happiest thing to see is the "completely normal protein electrophoresis" report that they run every 2 months.
When the Beast does return (and we all know that He does), my Onc and I have agreed that we should add pulsed Dex to the Thal as first treatment, then add Velcade when that fails, then possibly another SCT. I have plenty of cells "on ice" in the lab. As high-dose Cytoxan worked so well on my MM the first time we used it, that also is a distinct possibility, but more gentle protocols are now available.
I feel really good: I "power walk" two to three miles each day, and do moderate weights in our community exercise room. I work about 25 hours a week selling, and could handle a full-time job, except that I am officially "retired" and I don't want to spoil the image! (LOL) I earned my "Old Fart" status.
I am extremely fortunate in that my oncologist office (the Fairfax, Northern Virginia Hematology-Oncology Group) has a lot of MM experience. While not true MM specialists, my primary oncologist, Dr. John Miller, sees a lot of MM patients, and they fully appreciate just how individually we all must be treated. MM is a weird disease, and they know it. More importantly, they have put together a marvelous staff of NP's, PA's, and RN (Onc)'s, and this is so important to good patient care. Advice in the strongest term: If you are not satisfied with your doctor, get another doctor! MM is a very serious condition, and while treatable, is nothing to play around with. You, as the patient, must assume responsibility for many decisions, and you must have a physician that listens and answers questions.
I am active in our local MM support group and am certainly available if anyone wants to contact me. I currently live in the Northern Virginia side of metro Washington, DC (about 5 miles from the end of the runway at Dulles Airport).
November 2006: Happily, the Beast is still in the cage. I had all of the tests run 2 weeks ago :the SIEP, UPEP, Chem Profile and Hematology Profile. All of the chemistries and hematology results are within the normal range, and the electrophoresis results indicate "normal protein electrophoresis, no monoclonal proteins detected." Whew! I continue to take 50mg of Thalidomide daily as maintenance, and have been "on" this dosage since November of 2004. Peripheral Neuropathy is troublesome but bearable: lots of burning in my toes but my balance has not yet been affected. I take the vitamin recommendations that were published under the DFCI program. My immune system must have bounced back very well following the SCT in March of 2003. Since that time, I have not even had a case of the common cold. I have never experienced a case of influenza (lucky me!), but my docs did insist that I have the yearly "flu" shot and also the pneumonia vaccine. 'Tis better to be safe, they feel. So, it's now a matter of seeing how long the complete remission will last. A BMB last month was totally normal, with less than 1% plasma cell load reported, and no abnormal cells noted. When I do relapse another SCT is certainly in consideration - the first one really worked!
June 2007: The Beast is still in the cage! My oncologist runs the ETKM (Every Test Known to Man) every 3 months, and this latest battery reports "normal protein electrophoresis, no monoclonal proteins detected" on both the SIEP and UPEP. All chemistries and hematology tests are also in "the green." This makes 4 years and 3 months of CR following my SCT in March of 2003. A skeletal survey reports no change in the lytic lesions that are in my skull (I really don't need any more holes in my head). I continue to take the Thalidomide 50mg, but for the past year have "backed off" to 1 every 36 hours, instead of every 24 hours. I've been on Thal for 2 1/2 years as maintenance, and the PN is slowly getting worse, spreading from my toes to most of my feet. I take the large doses of B1,B6 and B12, with additional "balanced B complex, and I think it helps. As my immune system is functioning at a great level, my oncologist OK'd my getting the Shingles Vaccine, so in the future, I hopefully can avoid that horror. Gosh, I have been so fortunate: I credit the good medical care and just plain good luck!
August 2007: The news continues to be very, very good. Every 3 months, my oncologist runs what I call the "ETKM" profile: Every Test Known to Man. Most recently, all of the chemistries and hematology results are completely normal, and the all-important for MM, the SIEP (Serum Immuno ElectroPhoresis reports "normal protein electrophoresis, no monoclonal proteins detected." Whew! This makes 4 years and 6 months of Complete Remission, following my SCT in March of 2003. I continue to take the 50mg of Thal as maintenance, but have "backed off" to one-every-36 hours, to hold the developing PN at bay. I'Bob Oberle "It ain't what you don't know that'll kill you, it's what you think you know that really ain't so." I've been on the Thal since November of 2004. I continue the Aredia every 3 months. My quality of life continues to be excellent, excepting only the 30 pounds that I've got to lose, since I eat everything that doesn't crawl off the plate.
November 2007: The news continues to be very, very good. I just finished the latest round of my every-three-month battery of tests, and the crucially important Serum and 24hr Urine Protein ImmunoElectrophoresis reads "normal electrophoresis, no monocloncal proteins located." Hooray! The Complete Remission since my SCT in March of 2003 continues. All of the chemistries and hematology tests are also completely normal. Now, if I could just lose the 30 pounds......LOL
September 2008: As of August 15th, I am still in Complete Remission, with no sign of The Beast. This makes it 5 years and 6 months since my SCT. Hooray!
August 2009: Would you believe six years and six months of Complete Remission? I don't know what I'm doing right, or maybe I'm the luckiest myeloma patient in the world, but the latest lab reports show no sign of The Beast, and the latest skeletal surveys show no change. If I weren't so old and homely, they could use me as a Poster Child for the stem-cell transplant program. I continue the 50mg Thal one every 36 hrs, but have completely discontinued the Aredia.
Best regards to everyone!
Bob Oberle, Chantilly, VA
Bob reportedly died at age 72 due to non-Myeloma-related illness. - DG
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